Reprinted with kind permission of Melissa Swanson
Like most in the chronic pain community I was excited to hear that Lady Gaga was speaking out about her recent diagnosis of fibromyalgia.
I have been hoping for years that the fibromyalgia/chronic pain community would have a celebrity spokesperson. It isn’t that I was hoping someone would get fibro, but I was hoping that if they did, they would use their celebrity status to shed some light on what most call the “invisible disease.”
Many fibromites have worried what it would do to how people think about us if they see how much a celebrity diagnosed is able to do when we can’t even get out of bed. We see her performing long concerts, singing and dancing at night after a long day of travel and rehearsal.
This past August Gaga announced her documentary. The film follows Gaga over eight months as she works on and releases her 2016 album “Joanne,” performs at the Super Bowl, and spends time with her family and friends.
Prior to the film release, she announced that she had been diagnosed with fibromyalgia. Lady Gaga tweeted that she wants to connect with others who also have fibromyalgia. She wrote, “In our documentary the #chronicillness #chronicpain I deal w/ is #Fibromyalgia I wish to help raise awareness & connect people who have it.”
Also, before the film release she was hospitalized and had to cancel her tour.
She posted on Twitter at 1:26 PM – Sep 14, 2017
“xoxo, Gaga ? @ladygaga?Brazil, I’m devastated that I’m not well enough 2 come to Rock In Rio.?I would do anything 4 u but I have to take care of my body right now.”
Finally! We had a voice that would be heard.
I couldn’t wait to view her documentary, Lady Gaga Five Foot 2.
I watched it by myself this weekend and several scenes stuck with me.
Watching her cry in pain saying, “I just think about other people that have maybe something like this that are struggling to figure out what it is, and they don’t have the money to have somebody help them,” she says through tears. “Like, I don’t know what I’d f***’ do if I didn’t have everybody here to help me. What the hell would I do? … Do I look pathetic? I’m so embarrassed.”
Tami Stackelhouse, author and Founder of International Fibromyalgia Coaching Institute, states, “In one scene, Lady Gaga talks about using adrenaline to push through her pain and perform. This is the push/crash cycle. If you can break that cycle (and yes, you can break it) you’ll have more predictable energy levels and less pain. Some info on how I recommend you do that can be found in my first book. Grab a free copy at TakeBackYourLifeBook.com”
Personally, when I saw her laying on couch, grabbing someone’s shoulder in pain as they moved/stretched her hips and legs, I began to cry. Too many times I have needed others to help to manipulate my trigger points as tears fall down my cheeks.
I kept waiting to hear her talk about fibromyalgia. It didn’t happen. As it ended, I reluctantly decided to post in a couple of my support groups “I might be the only one who was disappointed in the documentary.”
I know who Lady Gaga is and have heard a lot of her music but I do not follow her enough to know that the film was recorded prior to her diagnosis. After learning that the diagnosis came after the filming of the video, I understood why she did not bring up fibromyalgia.
I think that the media hype that was created when she announced her diagnosis and canceling of the tour led to inaccurate posts about the film. We were all expecting to see a documentary showing her life with fibromyalgia.
Manda Laclair, a Fibro Warrior wrote,
“I watched it. It was supposed to “open the world’s eyes about fibromyalgia.” It didn’t. It did not mention fibromyalgia once. It showed Lady Gaga doing what she does every day. It was real. I cried when I saw her in a flare up crying because that’s been me so many times and it’s great for the world to realize that just because someone is doing their job and they look healthy doesn’t mean they’re not in pain. She admitted to being in pain for almost her whole tour once, and that sucks. Working through a flare up doing your best to ignore it is not easy. I’m thankful Lady Gaga was real and allowed us to see a glimpse inside what chronic pain looks like. But to say it opened the world up to what fibromyalgia is, is disappointing. So much more could have been discussed and covered; however, it is a great start. So thank you, Lady Gaga for sharing your story.”
I agree with Manda, I am grateful that Lady Gaga showed herself at her most vulnerable. I too was disappointed. I wanted to hear more. I wanted the film to be like a 20/20 or Dateline documentary.
However, I know now that the film was made before her diagnosis and was not meant to be about fibromyalgia but gave us a glimpse of the pain she has been going through over the past five years.
I saw similarities between myself and Lady Gaga.
- We both have lived most of our lives feeling insecure and not good enough.
- We both feel alone & lonely even while surrounded by others.
- We both have had surgeries that are still causing us pain.
- We both have tried various therapies to help relieve the pain. i.e. trigger point injections, cupping, massages, stretch therapies and medication.
- We both have to rely on others to help to bring us our medicine, ice packs, heating pads, and work our trigger points.
- We both have family members with Lupus.
- We both make the mistake of pushing ourselves to get through things we have to do and then experience a painful crash afterwards.
and like Lady Gaga….
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“I have always been honest about my physical and mental health struggles. Searching for years to get to the bottom of them. It is complicated and difficult to explain, and we are trying to figure it out. As I get stronger and when I feel ready, I will tell my story in more depth, and plan to take this on strongly so I can not only raise awareness, but expand research for others who suffer as I do, so I can help make a difference. I use the word “suffer” not for pity, or attention, and have been disappointed to see people online suggest that I’m being dramatic, making this up, or playing the victim to get out of touring. If you knew me, you would know this couldn’t be further from the truth. I’m a fighter. I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life. They are also keeping me from what I love the most in the world: performing for my fans. I am looking forward to touring again soon, but I have to be with my doctors right now so I can be strong and perform for you all for the next 60 years or more. I love you so much.” ~ Lady Gaga
Melissa Swanson is a chronic pain patient, advocate, and author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 16,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice." She's a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and a member of the Leaders Against Pain Action Network.
You can find Melissa at: